Medical Treatment for Children – Who Gets To Decide?

The tragic case of 8 month old baby Charlie cannot fail to draw sympathy for both child and parents. Earlier this month, a Court was asked to decide what was in his best interests medically.

There is no question that everyone concerned wants what is best for Charlie. The problem is that those caring for him cannot agree on what that is.

Normally, parents have the authority and indeed responsibility for deciding on and consenting to particular treatments. Clinicians’ responsibility is to act in a child’s best interests - which is not necessarily the same as the parents’ wishes. In most cases, parents follow the advice of the clinicians but there are occasions, such as in Charlie’s case, when opinions will differ hugely on what should be done. A stalemate ensues and the only recourse is to the Court which will look at the case objectively, weighing all the evidence available.

In Charlie’s case, his parents are desperate to take him to the US for experimental treatment for his mitochondrial disease. They made the argument that this is important, not only for medical science but to enable their son to have a last chance for life.

However, clinicians in this country considered that the treatment was too experimental and in any event would not improve the significant brain damage he had already suffered. They propose to withdraw life support on which Charlie is entirely dependent and without which he will not survive.

His parents and clinicians appear to accept that Charlie will not be able to recover from his devastating brain damage. They also accept that Charlie cannot go on lying in a bed and being artificially fed and ventilated indefinitely.

The Court considered the pleas of both sides. It acknowledged the parents’ anguish and efforts to raise funds for Charlie’s treatment abroad.

The Court held that, without a real medical benefit to Charlie, to put this very sick young baby through the trauma of a journey to the US and then experimental treatment, without any identifiable evidence that his condition would be likely to be any better, would be unfair.

The Parents are considering an appeal, and Charlie’s life support continues in the meantime.

Thankfully, these cases are rare. Parents and clinicians normally agree on treatment for children. Sometimes there is a difference of opinion but, after one or two avenues have been explored, consensus normally emerges as one or other group accepts the other’s proposal. Only now and again will the Court have to be asked to decide, and it is of some reassurance that both clinicians and parents can rely upon the dignity and fairness the Court can bring.